Fifteen-minute consultation: Therapeutic hypothermia for infants with hypoxic ischaemic encephalopathy—translating jargon, prognosis and uncertainty for parents

Abstract

Hypoxic ischaemic encephalopathy may lead to death or severe long-term morbidity. Therapeutic hypothermia (TH) increases survival without impairments in childhood, but prognostic uncertainty may remain for years after birth. Clear and accurate communication is imperative but challenging. This article explores the predictive value of routinely performed assessments during TH, as well as the qualitative research relating to parental experience. This article will benefit paediatric trainees, consultants and nurse practitioners in providing: (1) the background information needed for initiating a conversation with parents regarding outcome and (2) optimising their communication with parents in translating jargon, prognosis and uncertainty.

Parents' Experiences on Therapeutic Hypothermia for Neonates With Hypoxic-Ischemic Encephalopathy (HIE): A Single-Center Cross-Sectional Study

“…In addition, short-term and long-term neurodevelopmental prognosis is vague upon initiation of TH and depends on various clinical short-term outcomes and neuroimaging results. Understanding the concept of neuroprotection and multiorgan involvement in HIE can only be facilitated by medical experts with expertise in neonatal neurology and communication 10,20,21. The concept of targeted communication has been suggested by Lemmon et al.,20 addressing fragmented communication, communication of complex therapies, and communication of prognosis.…”

“…Understanding the concept of neuroprotection and multiorgan involvement in HIE can only be facilitated by medical experts with expertise in neonatal neurology and communication. 10,20,21 The concept of targeted communication has been suggested by Lemmon et al, 20 addressing fragmented communication, communication of complex therapies, and communication of prognosis. Targeted communication could be applied to explain the severity of HIE (Sarnat score), to improve parental understanding (see Figure 2) and to facilitate perception of expected outcomes.…”

Neuroimaging to guide neuroprognostication in the neonatal intensive care unit

“…Although more challenging, the likelihood of social-emotional and behavioral challenges should also be prognosticated. When communicating prognosis with families, it is important to acknowledge prognostic uncertainty and neuroplasticity of the developing brain and present expected outcomes in terms of likelihood [14].…”

Mild Hypoxic–Ischemic Encephalopathy: Can Neurophysiological Monitoring Predict Unfavorable Neurological Outcome? A Systematic Review and Meta-analysis

“…16,17 Despite continued progress in diagnostic modalities, accurate prediction of outcome for neonates with HIE remains a great challenge, particularly for newborns with mild injury. 18,19 No test is totally predictive of infant outcome, so prognostic uncertainty may remain for years after birth. 19 Electroencephalogram (EEG) and amplitude-integrated electroencephalogram (aEEG) have both shown to offer excellent predictive ability as early as 3 to 6 hours after delivery 20 and the result is strongly linked to the severity of the EEG anomalies observed.…”

“…18,19 No test is totally predictive of infant outcome, so prognostic uncertainty may remain for years after birth. 19 Electroencephalogram (EEG) and amplitude-integrated electroencephalogram (aEEG) have both shown to offer excellent predictive ability as early as 3 to 6 hours after delivery 20 and the result is strongly linked to the severity of the EEG anomalies observed. 6 The predictive role of the EEG and aEEG tracing as predictors of moderate and severe forms of HIE is now widely documented.…”